What a month, talk about highs and lows!
About as low as it gets…
Toby started June in Intensive Care in Southampton, on a ventilator and in an induced coma after two prolonged seizures. I know most of you will have read the daily updates we posted at the time so won’t go into too much detail however I think the incredible thing is that Toby went from being in a coma on Friday, to waking up Tuesday, moving to a normal ward on Wednesday and then home on Thursday, almost exactly 7 days from when we’d first dialled 999. It was a hell of a week.
Over the coming week Toby amazed us by showing his determination to not only recover but get on his feet, literally, as quick as he could. What the experience taught us most was getting home as quick as possible is always the right thing, for all of us. In hospital Toby was ‘confined’ to a small cot as it wasn’t safe for him to crawl around the floor. For those of you that have met Toby you’ll know that confining him to a small town is difficult enough let alone a small metal cage! Once at home he could safely move around and if he fell due to being so weak it was on nice thick, safe, carpet and we firmly believe it aided his recovery. Importantly for us, we got to sleep in our own beds, not on a busy children’s ward, which is a massive boost to our energy and sanity.
While we were in Southampton we had the privilege of staying in a brand new ‘Ronald McDonald House’ – built by the charity to give the parents of poorly children somewhere to stay. This facility is incredible. It’s like a Travelodge but with kitchens and living rooms and was the only reason we were able to function while Toby was in ICU. Next time you’re in McDonalds (come on, we all pop in occasionally….!) just chuck that loose change in the big collection pot, I cannot begin to tell you how much good you are doing.
During the course of June Toby continued on his road to recovery and is doing well, despite another chest infection. Seizure wise he’s having less than before the ‘big episode’ but they are longer, more violent and mostly needing rescue medication which isn’t a good place to be. His breathing is also compromised nearly all of the time so we’re doing a lot of resuscitation which is a scary place to be.
Appointments
When you have a child you never realised how busy you’d be, singing, play groups, play dates etc however having a child with complex issues takes it to a whole new level, our diaries are full.
Be it Toby’s regular physio appointments at the hospital to help his core strength and movement, the monthly language sessions (again at hospital) to develop communication through pictures and cards, fortnightly PORTAGE at home where Paula works with him on developmental play and learning, through to all the medical appointments like:
- Renal scan in preparation for the Ketogenic diet (MK hospital)
- Meet the surgeon who will do his PEG operation (Oxford Hospital)
- Meet the ketogenic dietician who will guide us through the tricky diet (Bristol Hospital)
- Blood tests for base levels before the diet (MK hospital)
Not to mention regularly going to hospital to get his feeding tube put back in, as he frequently pulls it out.
It’s a bit busy! We’re becoming experts in NHS facilities across the country, so far Southampton hospital is definitely our favourite and we haven’t formed a proper opinion of Great Ormond Street having only been there once.
Please don’t misunderstand me, we’re exceptionally grateful for all the support we get, and it’s a lot, however it can be exhausting driving all over the country to different hospitals all the time.
IndieGo Nights
Gorgeous Painting donated by local artist Ed Robinson
Talking about support I have to mention IndieGo Nights and Ian Roberts as this is just another example of how amazing people can be.
I’d popped into a local pub a few weeks back for a pint, sadly a rare occurrence these days, and the manager told me about the monthly IndieGo night where Ian Roberts performs his music, gets local musicians, artists and comedians up and it’s generally a fun and lively evening at the Two Brewers. At the end of evening Ian passes a bucket around with the ‘pot’ going to a local charity. Christine, the manager, very kindly suggested it could go to Toby’s Trust.
When Ian got to hear at little more about Toby it escalated. Ian took it upon himself to arrange an auction evening at the same time as the music night and went around to all the businesses in our town and local artists to get items for auctioning off.
The response was overwhelming, everyone in the town got behind donating and the auction itself and the evening was not only really enjoyable but a huge success. In total £2,000 was raised.
We only met Ian the day before he ran the auction. Imagine that, a complete stranger asking local businesses to donate items for auction, all for a little boy he, and they, have never met.
Whilst I wish every day that Toby didn’t have Dravet, sometimes it does make me reflect that our lives are richer for it. The incredible people we meet and are touched by on a daily basis is quite phenomenal. To say we feel loved is an understatement, we have hundreds of people who invest their money, time, energy and emotion in our family, it is wonderful and makes us feel very special indeed.
Helen House
During June we had a planned stay at Helen House, we had tickets to go and see the Foo Fighters at Wembley and we’re planning on leaving Toby for the longest time we’d ever considered. However Dave Grohl broke his leg, the concert was cancelled and we went out for a lovely dinner instead.
We are so fortunate to have access to HH, the team there are incredibly lovely and we were surprised by how worried they’d been about Toby, literally everyone came to see him and us over the weekend, there were lots of hugs and a lot of happy people who could see Toby was doing ok.
Sadly he did have a few severe seizures whilst he was there but the team looked after him so well, we don’t worry as they just know how to deal with him and seizures in general.
Having a little bit of ‘us’ time is so wonderful and really does recharge our batteries.
We left Helen House and drove to Bristol to stay with my cousin overnight in readiness for our dietician’s appointment the following morning. Sadly Toby had picked up a chest infection and overnight was very sick. Not only did it undo all the good work a weekends rest had done it proved that we’re useless at ‘normal’ child illnesses. We panicked, we thought about everything from ambulances to oxygen but in the end, thanks to Becca’s sage advice, we stripped the sheets (twice) changed him and put him back down to sleep.
Coming up
July is going to be a busy month for us and our supporters. Toby will start the Ketogenic diet, he’s going for surgery on the 28th for a gastrostomy (PEG) and Kim starts a new job. Not sure how we’ll fit it all in but we’ll figure it out!
Commencing the 18th July John, Gary and Paul, all dear friends, will be embarking on their big adventure for Toby. They are following the route of the river Severn, firstly on bikes and then in canoes. As it’s been a long time since they were on bikes or in canoes it’s going to be an interesting trip and we wish them luck and fun on their trip.
Alongside this is Georgia Brock’s massive challenge. Just a little context here, Georgia is a 14 year old girl who lives in our town, her Mum & Dad came to the IndieGo and she decided she wanted to get involved and do something for Toby. Again, this is someone we haven’t met, yet, who wants to do something, it’s overwhelming. And what’s she doing? What can be more precious to a 14 year old girl than how she looks?
Georgia is going to shave her head!
Hopefully this is going to be double brilliant as not only has she raised over £1,000 already but she’s going to donate her hair to the Little Princess Trust, a charity that a friend told me about that takes real hair and has it made into wigs for children who lose theirs through illness or treatment.
What an amazing, inspirational young lady.
We also have our lovely friend Samantha doing the Bournemouth Pier to Pier swim in a few weeks, no mean feat in the open sea!
And finally
A thank you, again, for everything you do for us. At the moment the heat is lovely, but not if you’re a child who’s epilepsy can be triggered by hot weather or playing with water like normal children. Due to your generosity when we saw the weather forecast we were able to react quickly and buy some fans to help keep him cool. Thank you.